Don’t Hide

Duncan Cross has a great post about chronic illness that he’s titled The stupid truth about nearly every disease that young people get. Duncan lists a laundry list of side effects and personal crises that sufferers of that illness could experience. And then he asks the Big Question: which Chronic Illness is this?

There is a correct answer, but that’s not the point. The list can easily apply to nearly every Chronic Illness out there – Heart Defects, Cancer, HIV, and so on. The point, as Duncan says, is “it sucks, but no illness has a monopoly on suck.”

Our worst trait – Duncan has picked up on this also – is our tendency to let our our illness define us. It doesn’t. Granted, we are shaped by our experiences, but in the end many of our experiences are common to just being human. And if we learn to deal with that, we’ll see that we are pretty much like everyone else.

I have a heart defect, and because of it I have a variety of unusual life experiences. But if you strip out everything in my life that is affected by my heart, there is still more than 90% of me left… and that part is boringly normal.  I eat, I sleep, I chase the ladies – occasionally they chase me, but not as often as they should -  and I even get frustrated and yell at the TV when the Atlanta Braves aren’t doing well. (I’ve been yelling a lot lately!) Oh, you do things like that too? It must not be that big of a deal, then.

I had some good luck while I was traveling to Philadelphia for the Adult Congenital Heart Association (ACHA) convention – I had to change planes in Memphis, but my flight was delayed and that would leave me with only ten minutes to change planes. When I pointed that out to the ticket agent, they shifted me to another flight – direct to Philadelphia!  But I arrived ninety minutes early and couldn’t check into the hotel, so I sat down and did a little people watching. I tried to guess who among those who passed by might also be an ACHA member. All my guesses were wrong – we don’t wear signs.

So even though some of us have to live with a different form of normal, we’re more alike than we are different. The goal of living with a heart defect is not to withdraw into our own world, but to live. And that is probably the most important piece of wisdom that I can pass on.

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2 Responses to “Don’t Hide”

  1. Kelly Says:

    Amen. That is the gift of heart disease…or any disease…in confronting death we become free to live..fully, completely and NOW.
    We are all terminal.

  2. Deepti Says:

    This is so true. It’s easy to get sucked into a vortex of self pity and begin to get hypochondriac about everything. Heart patients have to monitor a lot of things in their lives which other people don’t generally worry about, and CHD patients have to do that from Day 1 to Day Last. But we have to realise *everyone’s* fighting some battle or the other, and everyone who is alive is fighting to see the next day.

    This is totally my philosophy. :)

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